Frail

An Unholy alliance comes together in my seemingly endless war with MS.  This time, the pulmonary embolism did a number on me.  Trauma to the body, even surgery, kicks in the MS.  That happened with a lumbar fusion and bouts of  colon cancer and now my blood clot in my lungs.  It feels like a terrible tango with an unyielding enemy.  I have been trying to hide from the facts, but recently when I could not carry a cup of coffee ten feet from sink to chair and had to put it on the floor and slide it, my frailty was tough to deny.

This is not new, just worse.  “Gabe, we’re home, I had yelled to our middle kid a while back, as we walked in the door.  I repeated the call.  Silence.  “Gabe, we’re home,” Meredith announced loudly.  “Hey mom, he replied.  Is Dad with you?”  I had not been able to lift my voice enough to be heard, an unwanted reminder of my weakened body.

We headed into a revolving door. Meredith went first.   She entered the store and did not think to  look back.  The revolving door stopped, trapping me.  I could not push it.  People were waiting to get into the door, saw my cane and just waited.  The stalemate continued until I summoned the strength to conclude the circular journey.        

I cannot get used to the humiliation. 

Progressive diseases do progress.  Recently we ran an errand.  I always ride shotgun.  We parked, and Meredith went into a shop.  I suddenly decided to join her but could not open my door.   I threw my weight against it, but the door would swing closed before I could get even a leg out. So I sat.

Once, I could not drag my right leg into a cab before the sliding door closed on it, and a nice young woman, waiting for a bus, walked into the street to hold the door  open until my leg was safely inside.  All of these incidents add up for an aging man who feels as if he could blow away in a strong wind or get punched out by a girl scout.

I look around on the streets of New York and hobble along as people of all ages brush by me, not rudely, only hurriedly.  I stop and stare at strangers running up or down subway stairs, their arms full, paying no attention to their feet and whistling a happy tune.  How do they do that? I wonder.  Watching them just makes me dizzy.

I am growing frail.  That is undeniable, not just fear for the future but reality today.  Deal with it, I tell myself. Work at home when the weather is boisterous.  Ask for help, opening heavy doors.  That is not my strong suit, but it beats thanking strangers for lifting  me up from the sidewalk.  I did not ask for this, but neither did anyone else.

Those with debilitating illnesses, hardly just MS, fight the battle for self-esteem.  Our physical failures challenge our ability to get by each day.  That chisels away our pride at who we are and what we do, no matter the arena.  The obvious solution is to lighten up and stop placing such importance on doors and stairs.  Let go of your resistance to asking for help.  And please let me know how it goes.  I will be here, siting in sullen silence. 

30 Responses to Frail

  1. MB April 27, 2014 at 3:15 pm #

    Stop beating yourself up. You speak for so many of us who deal with the same assaults against our bodies, the same humiliations, the same frailties and unfortunately, the same societal injustices thrust in our faces daily.

    Today I’m looking at an invitation to my son’s commencement from Northwestern University, but instead of planning what his gift will be or the outfit I’ll wear, I’m wondering why handicapped seating only allows one person to sit with me but there are six of us planning to attend. (Who’s going to sit with the crippled mom?) I need to make lunch reservations that focus around restaurant accessibility instead of menu options. Is anyone feeling sorry for me yet? I sure am.

    I hate that I’m disabled. I used to be the one who (I thought) people envied because I had a great husband, beautiful and brilliant children, and a fulfilling career. I still have all of those things but now I’m damaged goods and those same people thank their lucky stars they are not me. They’ll take a cheating husband, hot and cold kids, and a job at a fast food place if it means not appearing to be a freak in public. (Ok, maybe I’m projecting my own feelings a little here.)

    So I meant to write a response to your blog post to make you feel better about your situation and for you to not feel guilty about having a chronic progressive disease that you didn’t ask for. But instead, I’m commiserating with you because this hand we were dealt totally sucks. With that said, we have no choice but to forge ahead.

    There probably is something to be said for accepting one’s situation and making adjustments accordingly. Does that mean we’re giving up? I always thought so, but now I’m wondering if making those adjustments will allow me to live again. Anything has to be better than feeling so empty inside.

    Now how’s that for a Sunday pick-me-upper?

    • MB April 27, 2014 at 3:22 pm #

      I probably shouldn’t have hit ‘submit,’ but sometimes I just need to vent.

    • Richard M. Cohen April 27, 2014 at 8:38 pm #

      MB-

      I am not beating myself up. These merely are facts of life.

      all Mort Shapiro’s office and say you are a friend of Meredith and Richard. Explain your situation tio his people. They can help you.

      R.

  2. Amy Corcoran-Hunt April 27, 2014 at 6:43 pm #

    I understand. I used to be an amazing person. I now need help putting socks and pants on. Whether I participate in things friends do is about wheelchair access. (My friends have been great; I just don’t like it.) When i’m out in the world, people talk to the person I’m with, not me. At any time, something could happen that means I need a stranger’s help. I could go on.

    I’m still learning how not to let it all mangle my ego. I’m also still learning how to laugh at myself. A red wheelchair helps.

    • Richard M. Cohen April 27, 2014 at 8:41 pm #

      Amy-

      Just swallow it. Eventually you will stop gagging. It’s tough but try.

      R.

    • Betty Moody April 28, 2014 at 7:07 am #

      Amy,
      You are still an amazing person, as are we all.

      • Richard M. Cohen April 28, 2014 at 10:40 am #

        Amen.

        E.

  3. L April 27, 2014 at 8:44 pm #

    Hi again,

    I’m relatively new to this disease and I don’t know what it’s like for you yet so please forgive my naïveté.

    In the past year, I was given an off label medication that has been used for ms but only intravenously, not intrathecally (as far as I know). I had both. There usually aren’t any adverse reactions or complications after the initial infusion, but I became weak (iron/ferritin deficient) and later developed new neuro symptoms (copper/ceruloplasmin deficient). I don’t know if I am healing but wonder if that isn’t what has been causing these deficiencies…hence my interest in your iron and copper levels after the stem cell injections.

    Your increased weakness and fatigue remind me of my iron deficient state. Just thought I’d throw that out there in case you, like me, refuse to accept nothing can be done and push for answers.

    I hope the healing and recovery start soon for you and keep you in my thoughts.

    Be well,
    L

    • Richard M. Cohen April 28, 2014 at 10:46 am #

      Dear L-

      I love that name.

      Many factors can combine to make trouble. For me right now, it is the pulmonary embolism and shingles, a lovely duo.

      Best,
      R.

      PS – I guess I can’t make fun of L, since I use R.

      • L April 29, 2014 at 8:11 am #

        That does seem obvious, doesn’t it? I wish it wasn’t so because taking a few iron capsules seems a lot easier than dealing with lasting post-embolism fallout and shingles.

        L is growing on me. I just might change my name.

  4. matt April 28, 2014 at 4:12 pm #

    Richard,
    Being newly diagnosed this year at 24 years of age just starting my professional career in this city that never sleeps I constantly find myself sitting in silence on my own. What scares me most about this disease is the helplessness that your posts often discuss. I don’t want to be helped, I want to be the one who helps. Accepting the reality of this disease is a tough pill to swallow. Closing out loved ones on my currently invisible day to day struggle gives me pleasure oddly. I don’t want pity. Though at different points of this disease and life, I relate greatly with your commentary and appreciate it. It’s easy to get down, and feeling sorry for myself feels great some days. But seeing a-holes like this Clippers owner “who has it all” on espn, and seeing homeless people my very age who have nothing on the streets of Manhattan, helps me put life in perspective. I have much to be thankful for. Having an honest voice on this wacky disease makes me thankful. So thank you.

    • Richard M. Cohen April 29, 2014 at 3:47 pm #

      You are 24. I was 23. Both young and disappointed by the news, smart and ambitious and uncertain about he future. Take a deep breath. It takes time. I evolved to who I am over many decades. Cut yourself some slack. You will get there.

      Best,
      R.

  5. Steph April 28, 2014 at 4:45 pm #

    I had Shingles three years ago at age 35 – came out of nowhere and it took several months to feel more like myself again (it really made symptoms worse and I was very weak). Have you ever tried acupuncture? I found this to be a huge relief from the pain and also helped with energy and some of the weakness.

    • Richard M. Cohen April 29, 2014 at 3:48 pm #

      I havew talked about it and am going to do it.

      Best,
      R.

  6. H April 28, 2014 at 7:37 pm #

    I’ve never commented before, but every time I read your blog it really hits home. I always end up teary-eyed whenever you describe what it’s like not to be able to do normal, everyday things—that until this disease took hold were things I took for granted. What struck me most in this post was when you described watching people on the street rushing around and not paying attention to their feet. I do the same thing. I’m envious of them, and wonder if they realize how lucky they are. But I know they don’t, because I never did when I was “one of them.”

    I am very new to this whole MS thing. A little more than a year ago, I was one of those people rushing around never fathoming my ability could be taken away. Now, I sit here wondering what happened. This time last year, I walked around with a slight limp (that came and went), which I assumed was due to a disc problem in my lower back. Now, there are days I can’t make it ten feet down the hall without my walking getting wobbly and feeling like the next step I take will send me crashing to the ground. I almost think it would be easier to accept if I was in some kind of horrible accident that robbed me of my ability to walk. Instead, I have to deal with the fact that my own body has let me down and is destroying itself, and I have no control of what its doing.

    Over the past few months I feel like my life has slipped away from me. My job, my independence, my social life, and sometimes my sanity are all just memories I fear I will never know again. Before last July, when I finally went to the doctor because my limp was becoming a nuisance, I was always very healthy. Then, less than a month later, I had a progressive disease that (unbeknownst to me) would soon take over my entire life. In all honesty, before diagnosis, I had heard of MS, but really knew nothing about it. Of course, since diagnosis, I’ve tried to educate myself on the subject, but I still feel confused.

    I’m scared. I’m scared that if my disease progresses as fast over the next year as it has over the past year that this time next year I will be severely disabled. Being diagnosed with PPMS, I was told there was no real treatment and my only options were joining a clinical trial for an anti-inflammatory or trying a round of an intravenous drug that temporarily kills off B-cells. I, however, feel stem cells hold the most promise when it comes to treating MS.

    Stem cells are actually what turned me onto your blog. I watched you and Meredith on Dr. Oz discussing your clinical trial, and have followed your story since. Not being asked to participate in a clinical trial for stem cells in the U.S., I researched treatments outside of the country. The one I like most uses umbilical cord stem cells infused over several days. My question to you is, did you ever try (or even consider trying) treatments outside of the United States? Part of me feels as though I’m grasping at straws by even considering going out of the country for treatment, but another part of me feels like it’s the best chance I’ve got.

    All My Best to You,
    H

    • Richard April 29, 2014 at 3:56 pm #

      I have thought about it, but you have to be very careful. Other countries don’t regulate medical procedures the way we do. I reqad about China, Korea, and Costa Rica in particular. Talk to a lot of knowledgable people. Good luck.

      Best,
      R.

    • Christopher April 30, 2014 at 4:27 pm #

      Hello.

      I apologize for the intrusion but I thought it was really important. I would never presume to know what is best for any other person, but please reconsider having any stem cell procedure that uses ESCs (embryonic stem cells). As Richard pointed out, other countries have incredibly weak regulatory controls in place over such medical procedures. But more to the point, embryonic stem cells are not fully researched yet for infusions as regenerative therapies and as such are too much of a wildcard in safety and effectiveness. In fact, most of the studies so far have failed miserably most of the time. Using embryonic cells, as opposed to somatic (adult) stem cells, is incredibly more complex. Whereas somatic cells only need a few steps to coax them into becoming a certain cell type, migrating to the right place, proliferating the right amount and becoming fixed, embryonic cells have more steps involved and one huge problem… they don’t turn off. They are highly energized and prolific, which is good in the sense that they are obviously viable. But science hasn’t figured out how to signal them to “stop,” and that is a big problem which is infamously known by another name… cancer. Many trials and procedures using embryonic stem cells have ended up causing tumors and other very serious medical conditions unrelated to the original medical problem. Add to that that other countries are not well regulated and there is no way of knowing the condition and purity of the stem cells to begin with it makes for a very dangerous scenario.

      Please speak to your doctor or neurologist and go over your intentions and concerns first before deciding on travelling somewhere where the promises are so dubious. In fact, I would be more than happy to connect you with people who are currently on the cutting edge of this technology and have them explain exactly what is possible today, and what you could be walking into by having these procedures done abroad.

      -Chris

  7. Betty Moody April 28, 2014 at 8:42 pm #

    Stumbling, sweating, holding on to every corner, and cabinet door. I’m home alone this evening after a “pretty good” day at the office. All I wanted was to make myself a salad and keep a peaceful state of mind. The distance to the stereo was over plan, and the dishwasher needed emptying. “You can do this”, the other me said. The noise in my head (to move me forward) ramped up. Groaning, reaching, swaying; talking to myself, one wobbly move after another. I used the walker, catching on the rugs, and settled for yesterday’s cloth napkin on the table. Nothing was easy, but finally; there, damn it. I did it. It wasn’t pretty, as most endeavors are not these days, but I did it, and lately every deed is a benchmark for tomorrow. These private challenges often bring me the most clarity and hope. Notably, through the hardest moments tonight I enjoyed the music, the nature outside my window, and I thought of our extraordinary community. MS Proud. Hoping you fall ound strength, and peace this day.

    • Richard April 29, 2014 at 3:59 pm #

      I get your point about private battles. I, too, fight them every day. They offer a special satisfaction.

      Peace,
      R.

    • Vicinia July 2, 2014 at 10:42 pm #

      I would like more info on somatic stem cell research that is being continued. I have only done alternative medicine but am willing to attempt stem cell research for all of us that are forced on the “sidelines”.

  8. Betty Moody April 28, 2014 at 8:45 pm #

    Hoping you all found strength and peace this day.

  9. David April 29, 2014 at 10:19 am #

    I try to be thankful for what I still can do.A good friend who has been sightless since birth tells me we are different because our functions are taken slowly and with such cruelty.

    PPMS has made me change so much on the outside, can people still remember who I was before?, I am told yes. Its so hard to accept the help I need. I try to convince myself that allowing others to help might make them feel good.I will try to believe that.

    For all who gather here at Journey Man, I picture all of us healthy again and walking tall,
    appreciating even more what we gain back

    I hope it starts with you Richard, then trickles down to all.

    • Richard April 29, 2014 at 4:02 pm #

      I hope we all get there together.

      Peace,
      R.

    • Richard April 29, 2014 at 4:03 pm #

      I hope we all get there together. We will celebrate.

      Peace,
      R.

      • Diane May 6, 2014 at 9:25 am #

        OH YES!!!!! And a grand celebration it will be!!!!!

  10. Kate Aquilino April 30, 2014 at 7:49 am #

    I’ve had MS for more than 40 years. I, too, feel frail. Some days I give in and go to bed. Others, I try to live a ‘normal’ life and the fatigue makes me cranky and hard to get along with – even with myself. I have never taken any of the MS medications, instead relying on alternatives: diet, acupuncture, counseling, etc. I look like a million but feel like an old warped penny. I wrote a book and would be happy if anyone read it and got some info or motivation or a laugh here and there. Muddling Through MS is the title. all info at muddlingthroughms dot com. Thank you.

  11. Jack April 30, 2014 at 4:04 pm #

    I am embarrassed to admit that reading all these comments reinforces the notion that my misery does like company. Just as with Amy, who commented above, strangers frequently address my wife when they rightfully should be speaking to me. At least now, after a waiter takes my wife’s order and then, nodding in my direction, asks “What will he be having,” she replies “I don’t know. You might try asking him.”

    I’ve had little old ladies with walkers hold doors open for me when they saw me shuffling along. Or how about the time, while waiting on a buffet line, I turned too quickly and fell in the direction of the desert table. A quick-to-react young woman caught me in her arms preventing a whipped cream-covered tragedy. While in her arms, I looked into her eyes and said “I just wanted you to hold me.” To my surprise, she didn’t even smile; she just stood me upright and went back to her place in line.

    Two years after being diagnosed with MS I had surgery to remove a tumor that turned out to be nonmalignant. My daughter told her friends that the doctor needed to operate on her father’s brain but he didn’t find anything.

    My point is that we all have stories about frustrating and sometimes humiliating experiences. But, somehow we find ways to move on and even find some humor in our predicaments. Knowing that others have survived similar experiences makes it easier. I wish no one had to go through what we are going through but, on some level, my misery does enjoy the company.

    Thank you for sharing.

  12. Betty Moody April 30, 2014 at 9:05 pm #

    I never feel more disabled than when I have to open something “convenient and
    re-sealable”.

  13. Lori May 1, 2014 at 1:19 pm #

    I became interested in The Journeyman when I saw you and Meredith on Dr Oz discussing your MS progression and the Stem cell trial. At that time I was worried I had MS and was debating having an MRI. I had my scan and it showed no lesions and have been told “you don’t have MS -I promise” by a highly regarded Neurologist. Then I thougt I have no business reading and commenting on these articles – I am perhaps unwelcome here. But I have come to realize that it has been valuable to learn how people with MS feel, struggle, and how they are trested by the rest of society. My heart goes out to all of you who live with a progressive illness and my eyes have been opened. So, I will continue to read these posts and hope and pray that the stem cells are the answer. (if that’s okay with you)

  14. jeanee May 2, 2014 at 12:58 am #

    Just discovered your blog and have a lot of catching up to do. I too marvel at the beauty of a person gliding effortlessly up or down a flight of stairs, often multitasking. It is a thing of amazement that I once did that too, without the appreciation of what having a healthy functioning body and CNS really meant.

    I watch it now like an Olympic sport. The grace and finesse of this simple activity.